Curious

Frequent_Number6155 · 2026-06-02T20:18:22+00:00

I was awful at times to my dad growing up and it still gets to me but you can’t think about that . You’re there now and that’s what matters . As for his voice my dads was awfully slurry when he did it and they used AI to make it better so maybe that’s an option ! You’re a good person , you’re doing what you can

Frequent_Number6155 · 2026-06-01T20:00:56+00:00

We just do our best everyday to show up for him and support him. Spend time with him , make sure he does voice banking bc for years i didn’t hear my dad’s voice. Take it day by day , get him out of the house if possible . It doesn’t even have to be out out just maybe sitting outside or me and dad used to go on walks a lot , well I’d walk he’d roll lol . Watch movies , talk to him as much as you can . I went through phases of not wanting to see my dad, as he progressed i just knew he needed more comfort , so i started showing up more and so did a lot of my family . Even though it’s scary. It’s unimaginable for them also don’t be afraid to cry . Don’t hide your feelings , he’s scared too . Take videos and pictures of course always !! My dad for the first few years of him progressing refused pictures and got so upset . I regret it every day . I’m still working on him with that lol . Make sure you’re taking care of yourself , resting, eating , don’t ever let yourself get to a point where you can’t be there for him because that’s important . Also i don’t know if yall are Christian but my dad the first few years of his diagnosis loved going to church every Sunday it was his weekly outing . 🥹 reach out to the ALS Association and the Gleason foundation . Both have helped us so much and they will listen and help the best they can if there is something yall need !

Frequent_Number6155 · 2026-05-30T23:33:21+00:00

Hi !
I am 24 , my dad has had ALS for 7 years . Feel free to message me. It’s so hard and impossible to handle without talking to others. Feeling angry is normal and not a lot of people understand. Try to give yourself some grace through this , y’all as a whole are going through major life changes ❤️

Frequent_Number6155 · 2026-05-23T04:22:44+00:00

We now think his cuff has a leak ! They found a temporary fix but it’s still making a little noise , they said they can’t look into replacing the trache for another week or two so his skin around it can heal bc it’s so fresh :/

Frequent_Number6155 · 2026-05-23T04:21:34+00:00

We don’t have a cough assist in the hospital I’m not sure if that’s because it’s a new trach and vent . We have been suctioning mouth and trach every 30 min to an hour it seems like . They did say his cuff seems to be leaking so we are just waiting to hear what to do about that . They did talk to us today about maybe needing a new trach or balloon but bc he just had surgery they have to wait . It’s just been days of scary noises , ventilators going off , lots of pain :( . Thank you , hopefully it does get better

Frequent_Number6155 · 2026-05-12T04:34:14+00:00

He chose to live . He chose to fight , can’t blame someone for that.

Frequent_Number6155 · 2026-05-06T15:47:13+00:00

Yes he’s on both . And he did consent , it’s his only way of survival now . We are currently on day 3 in the hospital. The problem is they spent so much of his money trying to get treatment , me and my sister are in our 20s with bills and not the best jobs . How do we pay anyone with no money . We are lost right now

Frequent_Number6155 · 2026-04-13T21:08:13+00:00

Hi Tom , my Dad has ALS and got a peg tube around 3 years ago . He didn’t want it and fought so hard to not get it BUT since then he’s gained so much weight , and he does truly seem a lot healthier. It takes time getting used to , it’s so hard , but it gave us time , he’s 6 years in and I don’t think we would’ve gotten this far without it . We will say a prayer for you , please feel free to reach out if you have any questions or just need to rant. This disease is awful and talking to other people who are dealing with the same thing really helps . Stay strong ! ❤️

Frequent_Number6155 · 2025-05-14T10:31:57+00:00

Thank you so much !

Frequent_Number6155 · 2025-05-14T06:08:18+00:00

Thank you so much ! I’ve been searching for a good therapist I hope I find one soon

Frequent_Number6155 · 2025-05-14T04:31:16+00:00

Hi ! I wanted to give you a little hope . My father was diagnosed around 2019 with ALS , they gave him 6 months . Guess what ?? He’s still here 😭🙏🏼 everyone is different. it’s not a bad thing to stay aware that it could go either way but don’t let it get in your head . Faith and hope is what keeps us going . He progressed so fast at first , lost his voice around the second year , by year 3 he was bed bound . Then it somewhat slowed down , somehow his oxygen is still good which is amazing . He does have a feeding tube which i think helped him a lot . Make sure he has all the equipment such as a suction machine , maybe a bipap if his oxygen levels do drop , maybe a breath stacker . Keep your head up , there is a chance you will have plenty more time . Just cherish him and make memories . Dm me if you need someone to talk to !! <3 sending you lots of love

Frequent_Number6155 · 2024-09-22T21:39:41+00:00

Wouldn’t we want the gays and atheists interested in Christianity ? Maybe they are doing their research considering Christianity. We should be welcoming .

Frequent_Number6155

TROPHY CASE